So I Just Had A Mini Stroke...

Hi Everybody,

Welcome to summer! It is a beautiful day here in Calgary, and I hope everybody is having a good start to their week. I am writing to you all to give you an update on what happened to me this past two weeks:

Two weeks ago, on a Saturday, I was getting ready to go out to a movie with my mom, sister, and my sister's kids. However, I didn't end up going because I started to feel really dizzy while waiting for my mom. It felt like the room was spinning around really fast and I felt nauseous. I moved to the floor to stabilize myself before I started to throw up, and thankfully my roommate was there. She asked me if I wanted her to call 911 and I did not want that. Stupid me! She decided to phone my mom instead and my mom insisted in calling 911. My mom entered the condo and said that she thought I was experiencing vertigo because she had had it before. The ambulance then arrived and asked about my symptoms before putting me on a gurney and taking me to the hospital.

Initially, I thought I was only going to be at the hospital for a couple of hours and that all would be okay. In reality, the hospital staff wanted to run some tests and I was booked for a CT scan to see what was really going on. Once the results were in, they told me that I had a mini stroke and that it may have been the result of numerous falls I had had over the years (in which I had hit my head). They told me that they needed to do more tests and keep an eye on me. Looks like I wasn't going home any time soon! I told my mom that if something bad happened while I was there, that I wanted her and my dad to let me go because living a life in a bed is not the life I want to live. At two in the morning, I finally got to sleep before the doctors woke me up to tell me I was being admitted and that I had to move to the tenth floor (so much for sleeping). Once I was up there they had to do another test and I was given a room with multiple patients already in it.

In the morning, I wanted to go to the bathroom but I had no energy to get myself up. The nurses asked me if I could go in a bedpan and I refused, so they went away and came back and they said they'd put me on a catheter. I was so tired and couldn't sleep, couldn't eat, and was scared that if I ate I would throw it up. I had a lot of visitors though, my parents, my sister, my roommate, some support staff, my best friend. There were many tears.

The next day, I had to do another CT scan for my head and the doctor said you have two options: Your brain could heal on its own and you would have to take a baby aspirin - or it will not heal and they would have to perform an operation. I was put on the eleventh floor to be watched, which was bigger and nicer because I had my own room with a privacy curtain that I shared with one other person (not multiple). The doctor came in on Wednesday and let me know I was doing fine and he was moving me back downstairs. They eventually wanted me to stay for one more day because they wanted me to get up on my own in my chair, but we didn't have a place for my wheelchair because I was back in the room with four other people. So on Friday morning, I went to see the physiotherapist and they said “If you can get up and out of your chair, you can go home.” I was scared because I had no idea if I could do anything since I had been in bed all week. Thankfully, I did it and I finally got home! Being in the hospital really took a toll on me so all I was able to do was lay on the couch and go to the bathroom.

 Now, I am doing fine, but I have constant headaches and still feel a little dizzy from time to time. My dream of walking right now is halted, as I was told that it's too dangerous right now. I don't know if it will be like this forever, but right now I'm sad to say that I have to focus on other goals. I also have lost a bit of independence right now, which all of you know is driving me crazy, but I have to do what I have to do until I get better. Thank you everyone for all your support and well wishes! 

Kids Who are Affected by Someone Who Has a Disability

Let me paint a picture for you. You're out with your child and they see someone in a wheelchair and ask "Mommy, what happened to them?". What would you say in response? Would you explain what you think may have happened to them, or say "Don't stare" and scold their curiosity?  Is there a proper way to react to your child's response, and if so, what is it? I bring this up because I believe that as parents and adults in society, we highly influence the little ones in our lives. Religious and political beliefs are often passed down generations, and beliefs about people with disabilities are no exception. 
Will you child grow up to believe that people with disabilities are human beings like everyone else?

I bring this to the forefront because our parenting styles will impact important areas of children's lives beyond the home. An example is when our children become old enough to go to school. All children want to play and be accepted by their peers, whether it is on the playground, in the classroom, or after school. Now imagine the child who is in a wheelchair on the sidelines. Although we may want to believe that they will be included in regular play, in reality, this is far from the truth. If children are not informed by their parents about people with disabilities and how they want the same things that any child wants, children are more likely to ignore, shy away from, or reject the child and not befriend them. In my own experience, I also found it hard to access the playground like other kids. If parents make more effort to inform their children about these issues, they are also more likely to speak with and influence teachers and the school board, who have the ability to make schools more accessible (e.g. by building accessible playgrounds or incorporating games that people with disabilities can play, such as throwing a ball). Also, children who grow up as disability advocates will advocate for people in schools, and possibly advocate for equal treatment for everyone (even beyond disability issues). All in all, the more that people talk about these issues, the faster we will see changes and start building successful futures for people with disabilities.

You may be thinking, "Well where to I begin with raising my children to be advocates for people with disabilities?". Good news: I can help (and I'm sure other people with disabilities have great advice too, so don't be afraid to politely ask). My first piece of advice is to teach your children that other children and people with disabilities are human beings too; they think, feel, love things, hate things, have dreams and goals, and have the human need to be loved and accepted. When we talk about the disability itself, we could invite our children to come up with ideas on how they can be more inclusive with other children with disabilities. How can they involve a child in play beyond playing on the playground, for example? Your child is going to have lots of questions, and please allow them! Questions are a great way for natural learning to take place - and your child should know that it is okay for them to ask children with disabilities questions too (while being respectful, of course). If a child does not feel like it is safe or right to ask questions, they will be too scared to approach or make a change in another child's life. 

Although not everyone will agree with me, I think we need to teach kids that it's okay to be friends with someone who is different from them in any way, shape, or form. This includes people with disabilities. For some reason, we seem to have come a long way with dealing with issues such as racism and sexism, but people with disabilities are still often seen as less-than human. We are people like anyone else with hopes and dreams, and we would love to get to know you too!

Building Trusting and Genuine Relationships Beyond the "Norm"

Imagine a couple walking down the street, holding hands, or eating at a restaurant. If nothing was out of the ordinary, would you continue on with your day and not give the couple a second thought? In modern society, the general consensus appears to be that relationships are healthy and expected if you fit into the narrow standard of "normal".

What is normal, you ask? Well, you may have unintentionally imagined a white, able-bodied male and female couple, which is not an unusual answer when we think of what has been socially acceptable throughout history. When you think of the media for example, are you more likely to see the above couple described - or an interracial couple? A homosexual couple? A societally stigmatized couple (e.g. a homeless couple)?

Yes, there have been improvements in the media when it comes to representing couples that do not fit the standard of "normal" that used to be strictly enforced. However, one group that I believe still falls through the cracks is people with disabilities - and specifically - where is the conversation that concerns people with disabilities dating people without disabilities? It seems like the only way people can see a person with disabilities having a romantic relationship is when they are paired with another person with disabilities. Why is this?

Is it so hard to believe that a stereotypically "normal" person could truly love and care for someone with a disability?  We raise our children to appreciate the differences of themselves and others; if this is actually enforced, why haven't people with disabilities been included into the dating pool? Some people may say: "Well you can't be with someone with a different intellectual ability etc.". But, is this entirely true? Is there anyone in your family that you love to death who does not match your intellectual abilities? 

It is also important to note that many people may assume that someone with a disability is automatically intellectually impaired, when in reality, there are multiple cases where a person's brain is in tact and they are still treated as if they are impaired. Some people even believe that we shouldn't be treating anyone as if they are "intellectually impaired" because our standards for intelligence don't encompass all types of intelligence (emotional intelligence, for example). 

Unfortunately, society has done an excellent job of making the assumption that people with disabilities do not date or have meaningful romantic relationships. This assumption is harmful because many people with disabilities may be raised to believe that they are not worthy or deserving of a meaningful, healthy relationship with another person (with or without a disability). Personally, I find it hard to believe that a "normal" able-bodied man would want to have a genuine relationship with me because I feel that I would be a burden or embarrassment on that person. How did I develop this belief? Maybe I would have a different, more positive belief about my worth in future relationships if I learned early on that difference was okay and expected? 

Also, another harmful result of these assumptions is that people with disabilities are not educated in what a healthy relationship would look like for them personally. How can you tell if someone new is truly wanting to get to know you, or if they are trying to get something out of you as a vulnerable person?  How can you trust that respect you as an equal person? How do you stay safe while still meeting new people?  It's sad to say, but even I have been personally sought out by scammers or strangers who want to victimize vulnerable populations, and I am not the only one! It becomes a day job realizing the true intentions of people.

Until the narrow standard of what "normal" is in relationships, I will continue to broaden the scope through sharing my experiences and mind with you all. I hope that the people that I know and love in my life will also continue to represent these underrepresented groups so that we can all enjoy healthy meaningful relationships in life. 

Have you Heard of "Growth-Attenuation Therapy"?

Hi Everybody,

I found this article about "Growth Attenuation Therapy", it's intended for children with disabilities as a way to keep them smaller and lighter as they grow into their adult years. It is a way of stunting their growth so that the parents can continue to care for them on their own. Many parents don't like the idea of sending their child to a home or institution, so this ensures that they can care for their kids in their own home. This is a controversial "Therapy", because it technically is not curing any illness or improving upon any existing medical condition. The "therapy" significantly stunts the growth and development of the child for the sake of being more manageable to take care of. 

It's sad, we don't know if it really helps them, or perhaps slowly kills them. I don't like this therapy for making the kids stay little. What happens when the parents are simply too old to care for them anymore? Do they have family members that can come and look after them? Does the government come in and take over trying to do the right thing for the child? I don't believe the government cares and they put people wherever  there is room, but would that be the best fit for the child? These questions have to be answered. But perhaps the most pressing question is "Does the end justify the means"? Is it really worth it to have a smaller adult that you are able to care for on your own even if it means putting their body and mind at risk? Who knows if this affects their mental development as well. I know this therapy is given with good intention but that doesn't make it ethical. That's all I'm saying. 

Truly I think people are afraid of letting their child with a disability to go out in the world and see what life can bring them. This is where I have been lucky. I have a wonderful family and they do the right thing for me. I moved out of my parents house when I was 18 and lived in a group home for eleven years, and now I've been living with my best friend for the last five years. The truth is, I hate to say this my parents won't be around forever, so my sisters will have to look after me. I am so thankful for them. But on the other hand, I feel sad for parents who want their kid to stay at home because they don't want them to miss out on "normal" family experiences. I don't know if they have plans for them. All I'm saying is do the right thing for the child. It's going to look different for every individual and their family.


Here is the link to the article :
http://www.nytimes.com/2016/05/04/theater/hamilton-tony-nominations-record.html?rref=collection%2Fspotlightcollection%2FEditors’%20Picks&action=click&contentCollection=Magazine&module=Collection&region=Marginalia&src=me&version=spotlight&pgtype=article

If you get a chance to read it...

A Mother Who's Trying to do the Right Thing for Her Daughter

In the news today, there was a mother who killed her mentally handicapped daughter. She lives in SW Calgary, so it hits a little close to home. The daughter was 38 years old and the mother was 68. The mom was a single mom to her daughter. It seems that the mother was the sole caregiver of her daughter her whole life. Her neighbour described her as "very dedicated" when it came to her daughter. She made an effort for her to be included in public school and ultimately be seen as a "regular" person. The maximum is five years for taking a life who have a disability but his just happened so no decisions have been made yet.  

Aside from all the political points that arise in this tragedy, I would like to focus on the heart of what's really happened here. If my mom looked after me like this mom, I would want my mom to euthanize me. Don't get me wrong, I would be grateful but I don't want rob my mom of anymore of her life. So my heart is broken because her mom's decision to single handedly take care of her, ultimately lead to her death. But on the other hand, it's not right to take another life because we don't know what the persons reality is, or what all goes on in their mind. 

Being that she was a single mom, I'm curious if she lacked support in her own life. Maybe she found her whole purpose in being a mother and caring for her daughter. Perhaps some part of her couldn't deal with the guilt of sending her to a home or an institution. Without a doubt, her identity was wrapped up in her daughter. Who knows if she hit a wall and snapped, or if she eventually gave up. We never know. 

This is the difficulty of caring for a person with significant disabilities. It does take a village and if there isn't one in place, you'll burn out. I wish parents didn't feel like they need to bear the burden so much. I wish there was someway we could tell our parents what to do if we can't talk. So they would know what to do and do the best thing for the child. Everybody needs help and we all want to help each other out. Having help with raising a child with disabilities should not make anyone feel ashamed or like they are a bad parent. It really is what is best for everyone in the end. 

Here is a link to the article:
http://www.cbc.ca/news/canada/calgary/patricia-melissa-couture-failure-necessaries-calgary-police-1.3555339

Quality Support

Today I was speaking with a woman who has been living with a disability and trying to get out of a troubling situation. The woman was having difficulties expressing her independence around her family; specifically, she had been fighting with her family for years about who would support her and under what conditions. Her story was hard to hear, especially the parts where she would be stuck with an abusive support worker, not be believed by her loved ones, and be denied a say in her own support. Fighting tears, the woman said she felt she had nobody to talk to about her situation and very little hope for the next support worker. 


This experience is just one example of a common problem for people with disabilities. In my own experience, I have found it very obvious when a support worker is working with me to receive a pay cheque, or when they sincerely care about the people that they work with. There is an alarming lack of quality support when people hire support workers who are merely working to clock in their hours; these people come in (rarely on time) and work the required hours, but spend little time getting to know who you truly are and what you care about. Additionally, they may be more inclined to do what they want to do, such as leaving to run their own errands for hours or making the person join them against their will. Quality support is important because it can lead to abusive or harmful situations for people who don't have 100% autonomy or say in their lives.




Instead, quality support first involves a support worker working for people with disabilities because they truly care about the people whom they work with. When this is present, support workers will go out of their way to get to know the person beyond their disability. They are supports, friends, family, and generally people who you can turn to whenever you need to. These people will go out of their way to make sure your goals and interests come before anything else. We definitely need more people like this in the social services sector to ensure people with disabilities are being advocated for and not oppressed. 

Advocacy

This is video about accessibility issues in Montreal. It opened my eyes that I want to make a video like this in Calgary. I am planning on doing it very soon. Canada as a whole is a new and modern country. We have a lot of services in place for persons with disabilities. But when it comes to universal accessibility, I'm afraid we fall short. This is a problem that effects more than just wheelchair users. People with crutches, strollers, impaired movement in anyway is affected. 

The reason this issue is close to my heart besides it affecting me personally is the fact that it's a basic human right. I will not be silent and act like it is ok that I cannot have access to my city and all the good things in it.